The Story Only I Can Tell

Fortunately, my son Aaron was born in Dec. 1974, right as the Education for All Handicapped Children Act (now IDEA) was being passed.

Previous generations of parents of people with disabilities gave us this new baby of a law. I am proud our group of paradigm pioneer parents nurtured this new law through it’s infancy and adolescence. We carry the scars and bullet holes but we also know the next generation of parents and people with disabilities will have more allies, laws, research, and practical information to move forward.

We proved even children with severe disabilities could live, go to school, work, and recreate in their home communities–a much better option to a life in an institution away from their families. We did good. Our children are doing things no one thought possible.

But now Aaron and all his peers have graduated from high school. Adult services have not evolved the same as school and children’s services. So once again, we are trying to move forward and our children’s civil rights and very lives are hanging in the balance.

My husband, Tom, and I are celebrating our 43rd anniversary. I’ve been a volunteer parent advocate most of my life, but when Tom retired, I grabbed the opportunity to go to the University of Cincinnati and got my Doctorate degree in Special Education and Early Childhood working with Dr. Annie Bauer, my friend and mentor. I wanted to understand how the professionals thought, I wanted to touch the lives of the next generation of teachers, and I wanted to understand best practice.

Our youngest son Tommy is now a radio frequency engineer and married to Ana Paula. We have a beautiful granddaughter. So the circle of life continues. We are blessed.

In the last couple years, I have noticed how the lessons caring for Aaron and vulnerable people also apply to my elderly parents. My dad died at age 84, but my mom is now 90. Now that I am over 60, it is humbling to think about my own aging.

This blog is a way of documenting the past, but most importantly it is about moving forward up the mountain of change.

What happens to people with the labels of autism and developmental disabilities AFTER they leave the protections of the school?

What happens when they are adults?

Where are the resources to help parents, caregivers, brothers and sisters?

How can families face the future without fear?

Elie Wiesel is quoted as saying, “Write only what you alone can write.”

Though I have not had the horrors of a concentration camp, in some ways I do feel like a survivor of the civil rights, inclusion and disability wars.

This blog is about the story only I can write.

I am hoping you will sign up for the “notice of new posts” on the left side of the homepage and add YOUR story and together we can create a future of inclusion for ALL people.